Stories about our son Ben, his disability and our family. Ben is 10, loves stories and is physically disabled. I am learning to be his ally.

Month: September 2015

It feels like an age ago, but in July and August Ben had a month with no school, less structure, and a mother nervous about how to fill all the time. My perceived ideal for school holidays is a mixture of laziness, constructive activities and some degree of chaos, but without school there are a lot of hours to fill in a month and finding a variety of things to do that Ben is interested in can be tricky.

In our borough there is no holiday provision for disabled children. Nothing at all. There are occasional misty-eyed mentions of a playscheme that used to operate at Ben’s old school but that got shut down. There is much talk about the Local Offer website; as part of new legislation in 2014 every council has to publish details of what is available locally for children with special educational needs and disabilities– schools, clubs, facilities. This is a brilliant idea – much of the good stuff in terms of provision for disabled kids is discovered through chats with other parents or serendipitous connections. The Local Offer should make clear what clubs and places there are in your local area, and which of them might suit your particular child.

I went to some consultation events about the Local Offer – our local authority were trying to work out what information parents, carers and young people actually wanted. The question I kept asking then, and continue to ask now, is what happens if all the Local Offer shows for people like me is that, in terms of leisure and holiday activities, there is NOTHING suitable for my child? And lo, here we find ourselves.

One way parents may fill a month of school holidays (or indeed weekends) is to take their kids to holidays schemes, football camps or drama groups. I hadn’t been able to find anything like this for Ben. I tried asking our local social services team (the team that helps Children with Disabilities) and they sent me a brochure which confirmed there wasn’t much on offer.

Through parents of kids similar to Ben I heard about a holiday scheme in a neighbouring borough that might be suitable. I got in touch with them directly, and they said they would be happy for Ben to attend. 10 days before it started our local borough agreed to fund Ben’s place. We decided he would go with his usual carer – partly because it wasn’t clear until quite late whether there would be funding for him to be looked after by their staff, partly because it’s the first time Ben has gone to something like this and I was nervous about leaving him with people he didn’t know!

So, following some communication about Ben’s needs and a phone call with the head of the service, Ben spent four days at a Whippersnappers playscheme. It was based in a special needs school, with lots of disabled kids, children with various special needs and some with no disability at all, and staff used to kids like Ben. He loved it. It was a warm fuzz of inclusion, fun and variety. *

The amount of stuff they packed in to each day was astonishing – singing, drumming, massage, stories, craft. They went to the theatre and to Kew Gardens. Ben came home with stuff he’d made, including a cookie as big as his own head which he was particularly pleased with. The staff at Whippersnappers knew what they were doing and had put huge thought in to how to fill days with fun stuff.

(Photo above from Facebook)

Ben finds unfamiliar places difficult but he was quickly comfortable at Whippersnappers. He was more relaxed than we expected (so I’m told) – to the extent that he fell asleep mid-massage – and really happy when he got home.

A couple of weeks later he got a package through the post. He was excited. We opened it up to find a t-shirt printed as part of the playscheme that has his name on it.

This has been a brilliant discovery. Just two days a week at a playscheme like this made a huge difference to the first couple of weeks of the holidays. If Ben has had a busy, stimulating, fun day out with other kids I can feel less guilty about the next day involving more TV watching that is ideal, or that Ben’s day is largely spent discussing new wheelchairs and hoists.

It’s good for him to go off and do fun stuff without me and come home smeared in paint, so that when we spend most of the other days together we aren’t bored of each other. I love our house filling up with the fruits of these labours – collages and pictures and a wheelchair covered in glitter on the floor.

Why it came down to a chance conversation with a friend for us to find something so perfectly suited to Ben continues to be a mystery, and it is still unclear whether our borough intends to do anything to provide for the kids in their borough who otherwise have no holiday activities to go to, or whether the social work team can do anything except to wait for me to send emails asking for funding for activities that I have found myself.

I feel like I’m constantly hoping for a level of proactivity and communication which never appears. It would be lovely if someone came to us offering something helpful for once, rather than waiting for me to do all the legwork. All of the needs so carefully discussed and worked on by Ben’s school during term-time do not disappear for the six weeks of the summer holiday, and Whippersnappers have proven that it’s possible to fill that gap with fun stuff.

It’s not good enough to build websites to list what’s not suitable, not accessible and not welcoming to disabled kids and ignore them for six weeks. The kids, and their families, deserve better.

* Yes, in the photo of Ben and James with the massive cookie it says ‘willy’ and ‘bum’ on the wall behind. This is what happens if you ask a 3 year old to help you label body parts.

We are coming out of the post-surgery haze. Having come out of hospital one week after the operation, Ben started at a new school exactly two weeks after surgery. We had feared that he wouldn’t be well enough and might miss the beginning of term, so it felt like a huge win to get him there in one (slightly bruised, stitched together) piece.

James has taken a significant chunk of time off work so we have had the luxury of introducing Ben to school slowly, calmly, with both of us around to make it work. We have been able to take him in together, learning how to drive into central London without killing a cyclist or getting embedded in a stationary traffic jam, and pick him up early. Max has come in with us and got to know the new school. We have all been able to meet the staff and see where Ben spends his day. It’s all been significantly less stressful than I anticipated.

It’s not all been plain sailing. Until earlier this week Ben had periods of profound unhappiness which couldn’t be resolved with paracetamol, or ibuprofen, or TV, or books, or lying in bed. There are few things more sapping than spending four hours with a child who is really unhappy and being apparently incapable of making things better. Maybe he had a headache (there is, after all, stuff in there that wasn’t there before), or a tummy ache (ditto), or the wounds are uncomfortable, or he’s just really bored of being with us at home. Not fun. But if someone told me pre-surgery that Ben would start at school two weeks later and be largely cheerful (or at least not miserable), I would have taken it.

He’s now done two weeks and he isn’t just putting up with school, he is really happy. As we walked in on the first day, Ben was all smiles. He has loved school thus far and he knew he would enjoy it, and he was right. That is partly because he likes learning and the variety of a school day, and partly because it’s an excellent school. James and I were far more nervous than Ben, but the staff are so obviously capable, receptive and skilled that we have had no choice but to happily leave Ben there and go for lunch in Clerkenwell or take Max to the Museum of London, again.

I’ve described before the importance, and marvelousness, of one’s disabled child going to a really good school. We have been fortunate enough to find two. Ben has moved schools because we, and the professionals working with him, felt he would benefit from more specific and specialist input so he has moved from a school for children with a range of special educational needs to a school for physically disabled children. He, and we, loved his previous school and were sad to leave. We all made very good friends there and Ben was lucky to be taught and supported by lovely, skilled people for two years. Saying goodbye to them all involved a lot of weeping, for once not just by me.

As part of leaving, Ben got his last school report. We spend a lot of time reading expert reports about Ben that are, necessarily, factual and focus on problems. Ben’s report was the exact opposite of this – hundreds of words of enthusiasm and celebration. It was a joy to read and was written evidence of the can-do attitude of his lovely teacher. Forgive me as I quote some of my favourite bits – comments that could only be made by people who have taken time to really get to know Ben and see past the immediate obstacles to communication and learning:

‘Ben is an extremely popular member of class and throughout the school community. Children and adults are drawn to Ben’s fun friendly nature and positive attitude.’

‘One of Ben’s many lovely qualities is his empathy. If another pupil receives praise or is celebrated for an achievement Ben will start to beam and become very excited.’

‘Ben has fantastic understanding of the spoken word and can communicate with adults using his communication board, his PODD book, symbols or just by gesture.’

‘Ben has really flourished with phonics activities this year, and with the continued support he receives from his family he has excelled in this area. Ben can now recognise a variety of letter formations and can confidently identify their sound. For example when presenting Ben with a choice of four sounds: ‘igh’, ‘th’, ‘er’, ‘ue’, Ben can confidently read the letters and communicate this by eye pointing.’

‘At the beginning of the year Ben required support at the trunk to sit independently. Now in soft play when he is propped up against the slide he can sit cross legged completely on his own for up to two minutes! This has been such great progress and we are all really impressed with how hard Ben works in these sessions.’

We are incredibly proud of him, so pleased he’s had such a brilliant experience of school so far and so thankful for such talented teachers and assistants. What a geek! Like mother (and father), like son.

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